The purpose of this longitudinal study is to evaluate a developmentally-oriented bio-neuropsychosocial model of psychological adjustment in young adolescents with spina bifida (10-13 years old at Time 1 and 12-15 years old at Time 2). Extensive multi-source and multi-method data will be collected across several predictor variable domains: (1) biological, (2) neuropsychological, and (3) social. A multidimensional perspective on adolescent adjustment will also be adopted, with a rigorous focus on the adolescents' social adjustment. The proposed study will be the first to collect observed peer interaction data (target child with close friend) in adolescents with spina bifida. The degree to which neuropsychological limitations experienced by children with spina bifida contribute to their social difficulties and other psychological problems will also be examined. Participants will include a sample of 140 children and young adolescents with spina bifida (with meningomyelocele and shunted hydrocephalus) along with their parents, a close friend, teachers, and health professionals. Spanish-speaking Hispanic/Latino families will also be recruited. Questionnaire, interview, neuropsychological testing, and observational methods will be employed during two home visits at Time 1 and two home visits at Time 2. In addition to evaluating the utility of the bio-neuropsychosocial model, several mediational and moderational models will also be tested within the context of the more general model. Such models will facilitate identification of underlying mechanisms for associations between variables (i.e., mediational models) and will attempt to isolate variables within one domain that compensate for deficits in another domain (i.e., moderational models). Findings of this study will provide information on the differential relevance of family relationships, peer relationships, neuropsychological factors, and biological factors for adjustment in adolescents with spina bifida. Moreover, the results will have implications for prevention and intervention efforts with families who have offspring with disabling birth defects.

This study represents the critical next step in our developmentally-oriented program of research on the psychosocial adjustment of adolescents with spina bifida. Previously, we conducted a 10-year longitudinal study of family relationships and adjustment in such children and found that early family relationship variables were highly salient in the prediction of subsequent trajectories of adjustment. Moreover, adolescents with spina bifida were found to exhibit psychosocial adjustment difficulties, including significant social problems (i.e., social immaturity and passivity, less social contact with friends). This prior study was a between-groups investigation where children with spina bifida were compared with able-bodied comparison children and was the first of its kind to include an assessment of observed family interaction in children with spina bifida.

To understand better the underlying mechanisms that account for these significant psychosocial difficulties, funding is sought for a new within-group longitudinal study of children with spina bifida as they traverse the early adolescent stage of development. Unlike our previous study, this investigation will include a thorough assessment of children's peer relationships and neuropsychological factors as potential predictors of variability in psychosocial adjustment outcomes. The proposed study will be the first to collect observed peer interaction data (target child with close friend) in adolescents with spina bifida. Moreover, we will examine the degree to which neuropsychological limitations experienced by children with spina bifida may contribute to their social difficulties.

Thus, a developmentally-oriented bio-neuropsychosocial model of psychological adjustment will be evaluated in young adolescents with spina bifida (see Figure 1). Extensive multi-source and multi-method data will be collected across several predictor variable domains: (1) biological (i.e., severity of disability, current and past health status, pubertal development), (2) neuropsychological (i.e., executive functions and attention, language pragmatics and inference making skills, emotion recognition), and (3) social (i.e., observed and perceived social behaviors with peers and family). A multidimensional perspective on adolescent adjustment will also be adopted insofar as the following constructs will be assessed: internalizing symptoms (e.g., depression), externalizing symptoms (e.g., aggression), social adjustment, quality of life and functional status, school performance, autonomy development, and medical adherence (see Figure 1).

Participants will include a sample of 140 children and young adolescents with spina bifida (with meningomyelocele [MM] and shunted hydrocephalus; 10-13 years old at Time 1 and 12-15 years old at Time 2), along with their parents and a close friend. Spanish-speaking Hispanic/Latino families will also be recruited (given the high relative prevalence of spina bifida in this population), constituting approximately 20% of the sample. Teacher- and health professional-reported data and medical chart information will also be collected. Questionnaire, interview, neuropsychological testing, and observational methods will be employed during two home visits at Time 1 and two home visits at Time 2. Videotapes of family and peer interactions will be coded by trained graduate and undergraduate students.

In addition to testing the utility of the bio-neuropsychosocial model, several mediational and moderational models will also be tested (see Figures 2 and 3) within the context of the more general model in Figure 1. Such models will facilitate identification of underlying mechanisms for associations between variables (i.e., mediational models) and will attempt to isolate variables within one domain that compensate for deficits in another domain (i.e., moderational models). Findings of this study will provide information on the differential relevance of family relationships, peer relationships, neuropsychological factors, and biological factors for adjustment in adolescents with spina bifida. Moreover, the results will have implications for prevention and intervention efforts with families who have offspring with disabling birth defects (Dryfoos, 1990).

Eligibility

Ages Eligible for Study:

8 Years to 15 Years

Genders Eligible for Study:

Both

Accepts Healthy Volunteers:

No

Sampling Method:

Non-Probability Sample

Study Population

Children with spina bifida (ages 8-15) and their families and close friends

Criteria

Inclusion Criteria:(1) young adolescents with spina bifida meningomyelocele (MM) and shunted hydrocephalus, given that they are more likely than children with milder forms of spina bifida (e.g., meningocele, lipomeningocele) to exhibit the neuropsychological difficulties that have been documented in past research (Fletcher et al., in press); moreover, spina bifida MM is the most common form of spina bifida with roughly 80-90% of such children having hydrocephalus, (2) ages 10-13 at Time 1, (3) families must reside within 100 miles of Chicago at Time 1, (4) absence of other comorbid chronic medical conditions, (5) IQ > 70, as assessed with the Wechsler Abbreviated Scale of Intelligence (WASI; Wechsler, 1999), and (6) ability to speak and read English or Spanish.

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Exclusion Criteria:

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Please refer to this study by its ClinicalTrials.gov identifier: NCT00891891